Achalasia - anyone else here with this?

poohbear2811 I've had 35 years of ill health, although not your condition, but I didn't want to scroll past your post without saying I completely understand and you're not alone. The stress of dealing with the NHS just compounds all health issues.

Sending you and a hug, and I hope you get some answers soon.

pooohbear3811 I don't have your condition but do have chronic bowel issues and fully understand your desperation. There are also times when battling the NHS causes more distress than the actual condition!
May I suggest you start a new thread about this - often people notice when it is an old thread and don't bother reading on, or miss later significant posts - which yours is

Adding an update on here, not looking for sympathy, just telling it as it is some days. Might also be handy for anybody else that comes along having found this post.
I have various other issues digestive wise over and above this, had been living on pureed food between about June 23 and March 24. In March, with help from a dietician and telling my GP, I stopped eating. Could no longer take the hideous pain that wracked just about every part of my body from my jaw, my shoulder, oesophagus, stomach, intestines and bowels. I decided it had to be easier to be hungry than to be in hideous pain. Along with the nausea, vomiting, regurgitation, diarrhoea and enough wind at both ends to start a tornado with, I had no quality of life and was too terrified to leave the house.
The wait between appointment times is just stupid.
My mood has been very low and I am on the verge of tears a lot of the time every day.
I went for an endoscopy last week to take samples to test for another illness called EoE. A lot of my symptoms, constant chest infections, constant mucus and coughing every time I eat or drink anything. The test was unsuccessful as they could not get the camera down. I was told I would need to contact gastro to see what they might want to do next. Spent Thursday trying to get hold of gastro but had no luck. By Thursday night I was beyond myself, not getting the endoscopy had snatched away the only ray of hope I felt I had at that point of finding out what else was going on. So having worked out there were no buses running through the village after dark that I could walk in front of I started googling how many of my tablets I would need to take to do a proper job. Wasn't a cry for help, didn't want to fail, just felt I can't live like this any longer. Sadly google doesn't tell you, surprisingly enough. The only thing that stopped me was the thought of being unsuccessful and people knowing I had tried and feeling sorry for me, pitying me or talking about me.
Spoke to hubby on the Friday morning and between him and my 2 daughters I went off to A&E and got some help. Got a new tablet to try until they can arrange something else and the A&E dr was giving gastro a hard kick up the backside to try and get something moving. I have just run out of fight.

I have swallowing problems. Had an endoscopy that showed gastritis but no problem with the opening of the esophagus and no know cause for the Dysphagia . Then had a barium swallow X-ray that showed that the muscles /sphincter at the bottom of the esophagus were not working properly. The esophagus goes into spasm when I eat. Realy painful. Some days it will not be too bad other days can’t eat much at all. Living mostly on mashed potato and carrots with weetabix for breaks fast but it takes ages to eat it. Awaiting results and seeing a consultant next month. There is a UK Achalasia group on FB and there are 1700 members so it’s not exactly rare. Here is a link www.facebook.com/groups/1006641519389150

pooohbear Re your last paragraph, my husband has found cider vinegar in warm water 3 ish times a day has helped with that.

no apology needed Wolwol.
Had a successful endoscopy earlier this week.
Shows an oesophagus motility disorder, a reduced oesophageal peristalsis which fits with my symptoms of dysphagia, nausea and vomiting, and also confirms the diffuse oesophageal spasms picked on on barium swallow x-rays. Also shows bile reflux in the stomach.
Been referred back to my gp with a recommendation for Gastro to see if there is anything else they can do to make life better.
Will go look for the UK facebook page.
How would be access the monthly online meetings?
For me if I could just get rid of the sputum and stop the constant cough I could probably live with the rest. But suppose we all have different wants depending on what we perceive to be our worst symptom.

Namsnanny

My husband has had difficulty with his throat in the manner you describe poohbear
Coughing, infections, ect.
He eventually had an operation to keep a flap of skin in his throat in place because food was getting into his lungs and obviously causing infection
It has helped, but this is really something he has to live with.

glad they found a cause with him, and an op has made a difference, though as you say "learn to live with it".

My husband has had difficulty with his throat in the manner you describe poohbear
Coughing, infections, ect.
He eventually had an operation to keep a flap of skin in his throat in place because food was getting into his lungs and obviously causing infection
It has helped, but this is really something he has to live with.

Apologies @pooohbear2811, I thought I'd get a notification if someone added to this thread, so wasn't checking...
What an awful journey you’ve had to get this far. Achalasia is rare enough that even medical professionals may not be aware of it. I was lucky, my GP suspected a hiatus hernia so sent me for a barium swallow and endoscopy, so I was diagnosed properly first time, two days before the first UK lockdown... I'm part of a group that has specialists associated with it, and online group meetings to discuss aspects - recent one was about keeping the oesophagus healthy. There are also monthly online support group meetings which I've found really useful and helpful. I too am part of a Facebook group, but I'm a bit rubbish with fb and don’t check regularly - I'll try to change that now!
Yes, no fix isn't good - it took me a while to understand that surgery and other interventions would only alleviate and may need to be re-done. I am finding things that help though, especially being in touch with others, so two us is good, though I wouldn't wish achalasia on anyone.

Hi, well there is at least 2 of us. I had a provisional diagnosis about 6 weeks ago after having barium swallow xrays, awaiting an endoscopy under GA to confirm it.
A bit of background that led me there - I have had MASSIVE problems with my asthma for over 2 yrs now. Persistent cough, chest infections, coughing up phlegm 24/7, hoarseness, pain in my back left side ( thinking pleurisy) but ever test respiratory ran came back normal. Lung CT showed lungs clear, huge doses of inhaled steroids making no difference, oral steroids pointless etc. Can assure you what I have cannot possibly come under the category of normal!! Lost my job through being unable to function.

Constantly hoarse, feel like I have something stuck in my throat 24/7, coughing when eating and struggling to swallow. ( annoyingly despite all this I have not lost weight)

So with months between respiratory appts I had read that GERD and such can cause issues with cough. So GP agreed and sent me for an endoscopy, thinking we could rule this out as a cause. I could not swallow the camera, just gagging on it, but then I can't clean my teeth without gagging. Dr doing it as a day case lost the plot with me, and a complaint was put it, but that's another story.

Anyway had the xrays which showed various problems, went back to see the specialist and he explained the reason I could not swallow the camera was because of the achalasia. This made me feel a whole lot better. So going to do an endoscopy under a general for further investigation.

Apparently, the difficulty with swallowing and the lump in the throat feeling do not show up on an endoscopy anyway, but now they know of it they will do other searches in my oesophagus when I am in.

For me while getting any diagnosis is not good, rare and no cure even less good, but to actually be getting some answers is a massive relief. This for me explains away a lot of what we thought were asthma symptoms as well. I did not know that your oesophagus can produce masses of mucus that you cough up, this for me was where the infection was not in my lungs. Better than believing I am going mad and my head is making it all up.

Once I have had the endoscopy this specialist is going to send me across to gastro, who would perform this test anyway, but there is quite a wait for them.

I have found a facebook group where reading other people's posts has been a great help.

Sometimes it is not nice to be rare, but 2 of us in the club is a start.....lol

Thanks, @nadateturbe. I'm on a waiting list for surgery. Also thanks for looking it up 😊 Surgery mostly seems to be an alleviation not a cure, so I'm really pleased your husband's OK 😊

Has your GP not suggested having treatment Wolwol?
I'm pretty sure my husband had the same thing. The treatment cured it.

Thank you, it's kind of you to reply. Fanny, thanks for looking it up, it is rare. Nade, that's interesting, I do hope your husband is fine now. It is not nice to feel stuff is stuck.

I thought it was worth asking, just in case another 1 in the 100,000 is here and would like a chat 😊 Unlikely but not impossible.

I'm lucky to have found a good monthly online support group, but sometimes it would help to vent/explore stuff more regularly/casually.

Again, thank you.

My husband had a problem that sounds like this in his late twenties. Sometimes food would get stuck and we had to go to A&E. He had an operation to widen the esophagus. Until the op, he was very careful about chewing food. It happened mostly with things like steak.

Hello Wolwol
I admit that I’d never heard of it (it’s a disorder of the oesophagus).
It sounds horrible, you have my sympathies.
It’s very rare (1 in 100 000 people in the US) so I doubt if you will get many replies.